Thursday, November 11, 2010

Living with Fibromyalgia

Maybe you've never wondered what it's like to have a husband with fibromyalgia. Maybe you need to know anyway. Maybe everyone ought to be more aware that the people around them that look normal and act normal could be living in so much pain every day that they just want to give up. How would you like to wake up knowing that you would hurt all over, have a headache, and have to think through a fog and that most people weren't going to know, care, or cut you any slack for it.

On a day by day basis, it means that we can't plan anything. Oh, we can try, but we will probably have to cancel a couple of times. The children got free tickets to a waterpark that's about a mile from our home at the beginning of June, we finally went at the end of August. It was the first weekend that summer that Brian felt well enough to go. We'll go on vacation and he might have to stay in bed while we do the things we planned. We never know if it will be a good or bad week, we can only guess.

We usually have a "date night" each week when our kids sleep over at their Gran's, but we can go months without actually doing anything on our date. Usually the energy required to go through the Hardees drive through is already pushing it. Our date nights are frequently just quieter, more peaceful versions of normal nights, hanging out watching a movie at home. I like them, I do. But I have to remember to have no expectations, because usually, he'll be too sick and in too much pain to want to do anything, especially after having to work all day as if he wasn't sick or in too much pain. There really isn't any choice about that.

It means that home repairs are left undone, doctor bills pile up, and remedy after remedy is tried and fails.

It means that the people who ought to know better, forget, or stop caring. Sometimes people just assume that you don't want to do anything. It's never the wanting that was the problem. Other people, especially people at work or at church, must assume that if you are there, you're probably doing okay. Bad assumption. If he was only at work on the days he was not in pain, didn't have a headache, and wasn't thinking through a fog, he would never be there at all. Just assume that he does have a headache, he is working through a pain haze, and he feels awful - and that if you'd woke up feeling that way this morning, you'd be home in bed. Then you'll be closer to the truth. So people, if he's home sick, you can imagine how bad he must feel, and when he comes back, he's not better, he can just stand up now.

And he doesn't just miss days at work, he misses far more days at the beach, church, family outings, and parties. He spends most weekends completely drained from a week at work and goes back not feeling any better.

And having fibromyalgia means worrying that someday all of that effort won't be enough and there won't be a job, and then choosing not to worry about that, because what good does that do anyway? It's in God's hands. Sometimes I don't know what God's thinking (usually!), but if His will brings Him glory than what else is there?

Having fibromyalgia means months and months of misery. Cold days are bad. Rainy days are bad. Hot days are bad. How do you encourage someone who always feels bad? It's not easy. But Brian stays in the Word, and the Lord encourages him. I'm constantly amazed that he can keep on going. I just try to push him enough to be able to live a little more fully. And sometimes I just have to do things on my own. And I'm learning to be okay with that. It's not how it used to be. It's not how either of us want it. It just is.

I just think people ought to know. You don't really understand until you're there. And I remember knowing about people that had fibromyalgia and not really knowing how to help, or how to fit that help into my busy schedule. But at least remember them. Remember to pray for them. And remember that unless you heard that they were miraculously cured, they're probably still sick. And if you did truly want to help, if everyone did one thing each year for the people they knew with chronic illnesses, imagine how much easier their lives would be. Time after time, I've seen people rush to help those sick from chemotherapy - and they should! But the church gets tired of helping these people who never get well, but never die. It disturbed me before I lived the reality for myself.

There are people who have helped us - with medical expenses, yard work, home repairs, and meals (when I get sick, it really goes downhill). And we are so grateful for each and every act of help and kindness. Our neighbors that we are still just getting to know on a more personal basis have really been more help to us than anyone else. They see the way he walks to the house after work, when he thinks no one is watching. They see the yard work start to go undone - and do it. They notice the car parked in the drive on a week day. They are a blessing to us, and we try to bless them in return.